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I'm having surgery

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Ulcerative Colitis
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Posted 10/11/2018 2:57 PM (GMT 0)
First out of three steps on November 8th.
Posted 10/11/2018 3:11 PM (GMT 0)
I am excited for you to put UC in the past. I know surgery is difficult to accept, and no one wants to cross that bridge, but I also know how strong you are, and how much you hate the stress and unpredictability of living with UC. Your attitude to living with UC reminds me a lot of my own. I am here for you!
Posted 10/11/2018 3:22 PM (GMT 0)
This time last year I couldn't get stool back to normal even with Predisone. Colon wasn't going to get any better and I didn't want to go on Remi or Humira. So decided surgery was the way to go. Had surgery #1 in Jan-#2 in April and 3 in August. Best decision I ever made. I had seen few surgeons already so only had to schedule things. Each surgery brings its own challenges but all manageable not like the dreaded UC monster. Good luck. Great bunch of people here to bounce things off of. You are now class of 2018 along with Valli,Song and others. Good luck
Posted 10/11/2018 3:34 PM (GMT 0)
Good luck Andrina, I believe this is the right decision for you smile
Posted 10/11/2018 4:34 PM (GMT 0)
Good luck
Posted 10/11/2018 5:31 PM (GMT 0)
It will be better to start the healing process from surgery than never with meds.

Hugs,
q
Posted 10/11/2018 8:25 PM (GMT 0)
Congratulations! Your life is about to get much better. We are blessed to have the option of surgery when meds fail. Surgery is not an easy road, but nothing with UC is. Just know that life gets better!
Posted 10/11/2018 8:38 PM (GMT 0)
My GI said surgery is permanent. I told him so is Colitis. I can either hope for the next med to work or just end it now. I'm looking forward to the relief and I'm confident in my surgeon.
Posted 10/12/2018 12:21 AM (GMT 0)
Welcome to the class of 2018
Posted 10/12/2018 1:13 AM (GMT 0)
Haha thanks I'm honored to join!
Posted 10/12/2018 3:55 AM (GMT 0)
Surgery is a big decision. One I put off for a while but I am now 2 months out of my step 1 of 2 and can say I Feel like a functioning human again! I didn’t get here overnight. It took a few weeks to get my energy back and to get used to the stoma. But the difference is amazing. I do have a few skin irritation issues with my stoma (which is common) but I’m managing. I have my final surgery nov 21st. I’m already planning a trip (in my head) to Hawaii for next fall with my husband and kids. The thought of enjoying a vacation with my family without the constant anxiety of bathroom location is just so exciting!
Remember, it’s marathon not a sprint with this surgery. Think about the long game. 😊
Posted 10/12/2018 10:08 AM (GMT 0)
Good luck!
Posted 10/12/2018 9:21 PM (GMT 0)
Good luck! I’m so glad I made the decision to get a j pouch. Hopefully all goes well.
Posted 10/12/2018 10:49 PM (GMT 0)
I wish you the best of luck!
Posted 10/13/2018 12:55 AM (GMT 0)
Best wishes, Andrina! Definitely keep us posted as your time/energy permits. / Old Hat (38 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/13/2018 1:00 AM (GMT 0)
That’s good timing, you’ll be able to enjoy Thanksgiving and the Winter Holidays this year.

I know that everyone worries about pouchitis but I have chronic pouchitis and it is not nearly as bad as living with UC. I’m so happy that I had surgery.
Posted 10/13/2018 7:41 PM (GMT 0)

colitisresearch said...
I didn’t get here overnight. It took a few weeks to get my energy back and to get used to the stoma. But the difference is amazing.


I expect that. After all even getting out of a flare in the past and back into remission, it took me months to regain my energy. I look forward on getting better and I know it will take time. I'm not scared of the stoma and can't wait to learn about it. I am envious that you have only 2 steps though, haha. My surgeon said I lost too much weight and I need time to heal that's why he recommends 3 steps.

Thank you all for your support. I so appreciate it.
Posted 10/13/2018 8:36 PM (GMT 0)
It’s funny- the stoma was the thing that I feared most and it turned out to be no big deal.
Best of luck to you!
Posted 10/14/2018 3:05 PM (GMT 0)
Good luck. It's amazing how much better you feel after surgery. I could tell the difference the next day. I was in pain from the surgery but I didn't feel sick anymore. I'm glad I finally did this. Mine is 3 steps too. My final surgery is on November 12th. I was scared I wasn't going to be able to handle having a stoma since I have a very weak stomach but it's been fine.
Posted 10/15/2018 5:44 PM (GMT 0)
How are you feeling Andrea? I hope a bit better.
Posted 10/16/2018 12:38 PM (GMT 0)
Good luck!
I just had quite a dramatic severe flare and became very unwell very quickly. After a blood transfusion I had colectomy and end ileostomy on 29th Sept. I dont know if I'll go for j pouch or keep the stoma.
I have found emptying the bag and cleaning stoma v easy. The hard part is skin irritation, red, itching and soreness from removing the adhesive bags. I have found adhesive remover spray really helps reduce the pulling on the skin!
I hope your surgery goes well and wishing you a speedy recovery. Im sure you wont regret your decision!
Posted 10/18/2018 12:14 PM (GMT 0)
You have 6-months, a year or more to decide whether you want the j-pouch or to keep your end-ileo with appliance. For now, focus on recovering and feeling well and then give it some thought. At least you get to try the end-ileo before you buy it for good. Some are happy and keep it, others want to have more surgeries.

There's lots of different shaped wafers, powders, and other things that can make your life easier. Talk with your ostomy-nurse and you can likely get lots of different samples to try. Try a few and see what appliance/wafers and other products work best for you.
Posted 10/19/2018 12:50 AM (GMT 0)
Well wishes for a speedy recovery.
Posted 10/19/2018 7:30 PM (GMT 0)
Thank you all for your support.

Skin irritation is something I'm scared about. Leaking is another thing.

Kara, I'm doing a little bit better. I actually had some formed stools without Imodium. I still have slight tachycardia. The last time I had a fever was five days ago. I'm still losing weight. At this time I am waking up before I poop myself since two days so that's sort of good news. I still have to get up several times at night however. I still don't have much energy but it's getting a bit better. Having my handicap parking permit certainly helps a lot. I'm so glad I have it.
Posted 10/19/2018 9:00 PM (GMT 0)
The itching goes away quickly if you diagnose it and treat it correctly. There are different reasons for itching.

If you work with an ostomy nurse and find the correct supplies for you then leaking is a rarity.

You can wait up to 2-3 years before having your next surgery. After that your sphincter muscles lose their strength.
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